May 27, 2008

It has been a long and difficult week with Ashley's passing, and it is good to be able to report some good news for a change.

Nate Tseglin, who was taken from his family by CPS more than a year ago for scratching his neck and arms, and has spent the time since then being forcibly drugged into oblivion and into a seizure disorder, is finally going home.

Today the judge released him and he and his family will begin to travel on a long road of physical and emotional healing from this abuse of the system. Pray for Nate and his family, especially pray that the physical harm that his incarceration has wrought on him can be undone.

I have asked my father in law, Steve Taylor, who attended the last two hearings, and called with the good news today, to guest blog his experiences and all the details:

“Do you understand what happened?” Nate Tseglin’s lawyer asked. “You are free to go home – for the first time in a year and a half.”

It was hard to take in. Nate’s mom and dad, and many others, had worked so hard to bring this day to pass.

Yet, in less than an hour-long hearing in Orange County Superior Court – much of the discussion focusing on jurisdictional issues and other legal technicalities - Judge Randall Sherman found no evidence that Nate is mentally disabled, or has no means of support apart from the state, and therefore ordered him released to his parents, effective today. Although technically on some form of 72-hour outpatient leave (i.e., his full release does not become official until Friday), Nate was free to go.

First stop was the office of a doctor recommended by close family friends, where Nate began the process of returning to normal life. It is a process which is expected to take months, as he is helped to grow stronger, physically and socially, is weaned away from the drugs he was given while in government custody and adjusts to his new life – now as an adult.

Because Nate has ASD, his parents and other experts expect these adjustments will not be made easily, or finish soon. Grateful and cautiously happy as they now are, they know today marks the end of one difficult journey and the beginning of another.

But they have hope, and the love, support and prayers of many friends. And their middle son, Nate, tonight is home.

May 19, 2008

Today is a day full of grief in our home, in our small town and in our biomed community. Ashley Brock, one of our own and one of Chandler’s classmates, passed away last night.

It is the story we read practically every month. An autistic child gets away from their family, drawn to the water that they love so much, and drowns.

Barry and Michele Brock invited over three friends to cook out on the back porch yesterday. The adults grilled while Ashley, her typical twin sister Alexis and two other children played in the grass.

And then came that moment that we have all experienced too many times.

“Where’s Ashley?”

Everyone scattered around the house calling her name, and immediately they looked over the fence at the neighbor’s back yard. Because the neighbors had filled up their pool the day before and Ashley had seen their children swimming.

And Ashley loved the water.

But when they looked, they didn’t see her and fanned out into the woods behind the house and into the street. A few more neighbors came out of their houses when they heard her name being called to help look for her.

That is when another neighbor checked the pool again... from another angle. He saw Ashley was at the bottom and dove in to pull her out.

Her mother performed CPR on her and a doctor who lived in the neighborhood was quickly called, the paramedics worked on her and the hospital staff continued to work on her for almost an hour and a half.

And they thought they were getting her back… but they didn’t.

Michele and Barry are devastated, and we are heart broken.

It is very hard for me to really believe that Ashley is gone. She was a child full of life and energy. She was always doing. Riding her bike or scooter or swinging. And not just any swing. Last week when the family was going to see their friends across the street, Ashley dug through the garage and brought her own swing over to use at their house.

She was a strong spirit. What she wanted, she wanted, and if you wanted to keep something from her, she made you work to keep it from her. Once Michele had begun teacher her ‘first_____, then _____’, Ashley turned it around on her and began to use it as a negotiating tactic.

“Ashley, time for supper.”

“Mommy, first supper, then cookie, then bike, ok”.

And if she thought you were mad at her, she would ask you for tickles. The girl was smart.

She knew all three names of every major composer. Her favorite was “Wolfgang Amadeus Mozart” and would sometimes play his music at 3 AM for everyone in the house to enjoy.

She loved books (wouldn't get on the school bus without one), and dogs, and did great animal impressions and carried her flashcards everywhere. And she loved bubbles and she loved to paint and she loved red and she loved stacking things.

And she was great at basketball. They bought her a full sized basketball hoop and she owned it.

And Ashley was loved.

Her parents changed their whole world around for her, giving up jobs and friends and family to come to a place that would be good for her. Barry was a loving, care giver dad and Michele was an autism mom like few others. Her advocacy for autistic child puts mine to shame, challenging school system bureaucrats head on when they weren’t working in interests of her child, but in the interests of their bottom line; searching out the doctors that could heal her child; and letting nothing get in her way.

And what she did for Ashley’s health… let’s just say I could only follow about two thirds of what Michele was saying when she talked about her daughter’s complicated medical picture. Again… her knowledge showed me how much more I had to learn.

And the Brock’s home security is much better than our own. Ashley was an escape artist who climbed out her second story window on the first day they moved into their house. So her windows didn’t open after that.

Which is why Ashley’s death doesn’t just grieve me, it scares me. The Brocks were so much more on top of things that Scott and I are, so if they can loose Ashley in just five minutes when she was only 50 feet away from them…. well…

Last fall I was sitting at my desk paying bills and Scott was upstairs in his office working when the police came to our door with Chandler who had been found three blocks away by a Verizon employee driving by. While we thought he was in the playroom, he left the house apparently to look for his brother who was at school. We never even knew he was gone.

Chandler knows his name and his phone number and his address, but all the police could get out of him was “Webster”. So we have upped our security, and bought a bracelet and even have a tracking system now.

But Ashley was only 50 feet away from them and they didn’t know she was in trouble.

There is not a family among us that doesn’t know in their bones that this could have been any of us. And still could.

This morning Michele all but begged me to get swimming lessons for Chandler. They had just signed Ashley up for them. Again… to my shame… I have not made this a priority, but I will correct that. She is urging us all to make it a priority for our children.

A small correction to what has been in the local coverage. It was reported that the police are investigating Ashley’s death. That does not seem to be accurate.

Last night the police were very respectful and kind to the Brocks and when they left the home they said that they had everything they needed, so even if there is still any formal inquiry going on, or paper work ‘open’, it is probably a formality.

The Brocks are getting good support from their friends and family, and from the community, and many people are asking what they can do to help. But they don’t really know yet. They are still reeling right now.

Michele did say that if any one would like to do something that she would like it if they would make a donation to the National Autism Association’s Helping Hands program that pays for biomedical treatment for struggling families, or to 4 Paws for Ability, who trains autism service dogs for our kids and never turns down a request from an autism family.

For those of you who were on the lists with Michele, she has signed off of all of them. I am sure you could imagine how painful it would be to see those emails coming in. If you want to leave messages for her and Barry here, please feel free.

UPDATE: The Ashley Brock Memorial Fund

A fund has been established to assist the Brock family during this difficult time.

Donations can be made to any Bank of America branch across the country in the name of Ashley Brock Memorial or mailed to Marina Curtis 5 Balsam AveBrunswick, Maine 04011

Brunswick, ME—Ashley Elaine Brock, age 6, died Sunday, May 18, 2008 as a result of a drowning accident.

Ashley, a daughter of Barry Edward and Michele Sporkman Brock, was born in Lexington, KY on February 7, 2002. She was in Kindergarten at Jordan Acres School in Brunswick, ME.

Ashley was a free spirit in every sense of the word and had an umlimited supply of energy. She enjoyed playing outdoors, the beach, swinging, jump roping, riding her bike or scooter, and shooting basketball on her regulation hoop. She loved bubbles, books, balloons, music, umbrellas, red wagons and painting. She regularly woke her parents in the night with the sounds of reading her dictionary or playing her Mozart cd. Ashley was never without her wildlife flash cards or a favorite book and loved all animals, especially dogs. She was a precious gift from God and the world is a better place because she was in it.

Ashley is survived by her parents, Barry and Michele Brock of Brunswick; her twin sister, Alexis Brock of Brunswick; her grandparents, Glenn and Mabel Brock of Berea, KY, Donald and Elaine Sporkman of West Point, IA; two uncles, Robert Brock and his wife Patricia of Berea, KY, Mike Sporkman and his wife Brenda of West Point, IA; an aunt, Sandra Hammonds of Berea, KY; and several cousins.

Friends and family may visit from 5:30-8 PM on Friday, May 23, 2008 at the Brackett Funeral Home, 29 Federal Street, Brunswick. A Mass of the Angels will be held 10 AM Saturday at St. Charles Borromeo Church, McKeen Street, Brunswick. Memorial contributions can be made to the National Autism Association, Helping Hands Program, 1330 W. Schatz Lane, Nixa, MO 65714, 4 Paws For Ability, Inc. 253 Dayton Ave. Xenia, Ohio 45385, or the Ashley Brock Memorial Fund at the Bank of America.

UPDATE: Yesterday was Ashley's funeral and the outpouring of love for her was beautiful. I want to share three very moving tributes that were given during the service. A letter from her mother:

While we gather here today to mourn the loss of one of our special daughters, Ashley Brock, I would like us to focus on celebrating the truly unique and special individual she was. She would be asking for big hugs or tickles right now if she thought we were upset or crying.

As I struggled to find meaning in this tragedy, it occurred to me that while her time on earth was brief, I believe that she had a purpose. I have been overwhelmed by the support and generosity from the community, our family, friends, neighbors and even total strangers. I have also found comfort in the numerous individuals who have indicated that Ashley may have prevented a tragedy in their home by encouraging them to either enroll their child in swimming lessons or increase security. I believe Ashley would find solace if another family could be spared the pain that we are going through.

Ashley also taught me to be more patient, compassionate, and empathetic and to enjoy the simple pleasures in life. My dear friends, if I have learned one thing in my journey with Ashley it is this – take nothing for granted. Appreciate what you have instead of focusing on what you think you want. Look at what you have right in front of you and cherish it – every smile, every hug and yes, even every trying moment. Practice patience when you think you have none left for harsh words can never be unspoken. Celebrate today versus yearning for tomorrow. Live life with no regrets and seize every opportunity to find all that is good in the world.

Ashley was truly a gift from God. While I feel so honored to have had Ashley in my life for six wonderful, yet challenging, years, I know that I am equally blessed to have her beautiful twin sister, Alexis. Alexis, while at times I may be sad because I miss Ashley, I promise to thank God each and every day because we have you. You too are a gift from God and I am so lucky to be your mommy. Mommy & daddy love you very much.

A poem written by her neighbor:

Fly, Spirit, FlyTo a place where every day is warm and sunny, and every beach is Popham.

Fly, Spirit, FlyTo a place where bouncing balls stretch out as far as the eye can see, and there’s a dog to chase every one.

Fly, Spirit, FlyTo a place where bubbles fill the air, monkey bars replace sidewalks, and there’s a bounce house on every corner.

Fly, Spirit, FlyTo a place where bike rides last forever, and you can run and never tire.

Fly, Spirit, FlyTo a place where words and hugs and kisses come easily.

And back here, when it’s time, and the time will come, although the journey will be difficult,

When it’s time to begin replacing sorrow with peace,

Aching with comfort,

And emptiness with fond memories,

We will understand that the flight is not

away

from us,But instead is over us and around us,Embracing us and whispering in our ears

“Thank you for everything.

All these things that bring me joy I know because of you.

This place is just like home.”

- Dave Aust

The eulogy given by her speech therapist Cathy Burgess:

Good Morning.

I am Miss Cathy, one of Ashley’s many speech therapists. When Michelle and Barry asked me to speak today, I knew immediately, that if there was ever a moment in time when I wanted to be present, it would be here, right now, in this moment. I am not exactly sure why, except to say that in all my years as a speech therapist, if there was ever a moment in time to give a voice to one of my precious children it is now.

For more than two and a half years Ashley would grace my doorstep promptly at 4:00 on Wednesday afternoon. She was a charmer. With those magnificent dark brown eyes, engaging cheshire grin, and an incredibly inquisitive mind, she stole my heart immediately and melted it into a million little pieces.

Teaching her to talk and communicate effectively was my charge, and as a seasoned therapist I was confident that I could meet that challenge. So with my agenda and materials in hand we would set off for the therapy room where I would begin my lesson. With a secure and authoritative voice I would tell her what the plans were for the day. Well, I think that if there was ever anything that could make Ashley laugh, it would be when you told her YOUR plans. She would look at me as if to say, “girl, its time for you to eat some humble pie.”

I learned quickly that I was not there to teach her, but rather she was there to teach me. And while she could not always say it in words, her message was clear…She didn’t just ask, she demanded, that I Listen, Watch and Learn.

Her first request was always the same. “I want pink and white ball please.” Mind you, it was not the blue and yellow one, or the red and yellow one, but the pink and white one…and God help me if I couldn’t find it. She would place it in a simple maze and watch with delight as it traversed down its winding path. Doing something once however, was never enough. While I might have interpreted this simple game as repetitive and monotonous, she found it fascinating and delightful. So I watched and I learned, and found myself becoming a master at how to find a zillion ways to teach a multitude of a skills with just one simple pink and white ball.

Next, came one of her passions. And there were many. She loved music and singing. Whether it was chanting songs that she had learned at school or playing her little piano, music was part of her captivating spirit. She made it clear though, that there were no rules about singing or playing music. As a matter of fact, it was obvious to her that one should sing absolutely everything and anything any time of the day or night. And as Michelle and Barry will attest to, the more Mozart you put in your life between the hours of 3 and 5 am, the more delightful your day will be, that is if you remember to play the same song 87 times at full volume. Who needs sleep? Mom always said that sleep was over rated anyway.

Colors intrigued her and when she learned what painting was all about, she would set out to create masterpieces. And, as any great artist knows, there are a multitude of canvases from which to choose from that can display your inner most creativity. There are one’s hands, one’s shirt, one’s pant’s, ones’ belly……

Her fascination for letters, words and the alphabet opened up the world of reading to her by the time she was three. Words helped her to say and practice all the wondrous things she saw in her world. Her language blossomed. Each week, brought new and exciting ways for me to understand and reach her. Looking back I recognize how tolerant she was of my stupidity. It was really as simple as knowing your ABCs.

A is for Ashley, athletics and activity.

B is for Bubbles, Books, Baby Einstein, Bikes, and Basketball.

C is for cards, cards, and more cards.

Yes, cards. She loved them. She had cards for every category of life. She carried them everywhere and recited them faithfully. There were cards for animals, toys, foods, and clothing. We had cards for letters, numbers, shapes, verbs and adjectives. Well, I thought, at least I got the cards right. But she told me this week loud and clear that there was one category of cards I failed to give her. I didn’t think to make Ashley her “I love you” cards. So I will do it now.

The first card would say on the front,

“I love you Mom and Dad”

And on the back, Thank you for your abundant love, commitment, patience and dedication to ensuring that my days with you were the best that any child could wish for. I am so very lucky to have two parents who demonstrated their incredible courage, strength, persistence and unconditional love every day.

“I love you Lexi” Thank you for being the beautiful, kind and loving sister that you are. Thank you for your hugs, your guidance and for being my teacher and my friend.

“I love You Grandma and Grandpa, nanny and papaw, and all my wonderful aunts and uncles and cousins.” Thank you for accepting me for who I am and embracing my challenges with love and support. Thank you for being there for me and for helping mom and dad through many challenging times.

“I love you special neighbors and friends”Thank you for playing with me, accepting me into your lives, and for providing comfort, protection, support, laughter and friendship to our whole family.

“I Love you all, my wonderful teachers”Thank you for filling my days at Merrymeeting, The Bath Y, Jordan Acres and Longfellow with fun, excitement and learning. Your dedication and commitment to me was incomparable. Thank you for cherishing me, recognizing my gifts, and believing in my potential.

Knowing Ashley, I am sure, that she would add more cards to the stack every week. I am also sure that as I continue to work with children in the years to come, they will all have I Love You cards.

Yes, Ashley had many glorious gifts, but like most children she had her challenges too. Did I mention that she also had Autism? While I refuse to define any child by the parameters of a disability, I am haunted by the fact that like Ashley, too many children in our community, state, nation and world are afflicted with a disorder that in my mind is as senseless and tragic as Ashley’s passing. Autism is a disorder that now affects 1 in every 150 children and there is no cure. For those of you here, who are in the trenches along with me in fighting this insidious disorder we must ensure that Ashley’s voice not be silenced. I implore you to allow this incredible child’s journey to speak through your heart and your voice. Be persistent. We must be vigilant in our efforts to increase autism awareness, educate our communities, and advocate for services so that we can ensure the safety and future of all these children. If we are able to use this tragedy to save just one life, then Ashley’s death will have not been in vain. We can make a difference. We do make a difference, and if there is ever moment when you doubt this for even a second, just repeat it 87 times until the doubt fades away.

I will miss you dear Ashley. While my Wednesdays will no longer be the same, I know for certain that your voice, your gifts, your lessons and your challenges will forever be a part of my life. I know I have many more lessons to learn. But yours are really simple to learn if we just remember what is truly important in our lives.

1. Celebrate the love, the joy and the magic in even the simplest of things.

2. Find your passions and embrace them with each new dawn.

3. Sing with sheer abandonment even if it is a Christmas Carol on a warm spring day and wear your fire hat if you feel like it.

4. Use your voice. Say “no” when you need to, even if it’s not what others want to hear.

May 12, 2008

She says that the medical community is to afraid of what they will find so they won't properly investigate the vaccine/autism connection, and that medicine has a duty to protect those vulnerable to vaccine injury.

A big thank you to Dr. Healy for speaking reasonable truth when so many doctors are speakingnonsense.

A second round of autism test cases begins Monday in federal vaccine court.

Tonight on the CBS Evening News with Katie Couric, Attkisson has exclusive interviews with the two families bringing the cases: two of nearly 5,000 autism cases that have been filed in this special court.

The government and many scientists have consistently maintained for more than a decade that there is no link between vaccines and autism. The Institute of Medicine issued a report in 2004 that was intended to put the controversy to rest, saying that the weight of the body of scientific evidence does not show a causal link between vaccines and autism. However, other scientists and parents disagree.

Attkisson interviewed Dr. Bernadine Healy, the former head of the National Institutes of Health and a member of the Institute of Medicine who breaks with her colleagues in this exclusive CBS News interview: Dr. Healy says the government has been too quick to dismiss the possibility of a vaccine-autism link, and that it should be explored with renewed vigor.

“Consider removal of carpeting section where the breakage has occurred as a precaution when there are infants, small children and pregnant women present.” This unsettling quote comes from the Vermont Department of Health and Environmental Conservation website, and it is one of the instructions given if you break a compact fluorescent light bulb.

In an effort to reduce the amount of energy we use, new legislation has been enacted at the local, state, and federal level here and abroad regarding energy efficient light bulbs. Incandescent bulbs, the type most people use in their homes, will in time cease to be manufactured because they are not energy efficient.

In the last year, compact fluorescent light bulbs (CFLs) have been repeatedly in the news because, although they cost about four times as much as a traditional light bulb, they use less energy to power them and last about six times as long. The main downside to CFLs is that they contain mercury, the second most hazardous neurotoxin on the planet. While a functioning CFL is not of concern, breakage and disposal of them are.

Compact fluorescent light bulbs contain a “trace” of mercury, 4 to 5 milligrams of it. The 25 micrograms of mercury in a flu shot, which may be responsible for the epidemic of children diagnosed with autism, is 1/200th of the mercury in a single light bulb of which there could be several in every room of every home. Keep in mind that leftover flu shots have to be treated as bio-hazard waste because they contain mercury, far less than what is in one CFL. To realize the enormity of this, consider that there are about 8 million households in New York State alone. If each household disposed of just one compact fluorescent light bulb per year, that’s over 32 kilograms of mercury to be recycled.

Compact fluorescent light bulbs cost 4 times as much as a traditional light bulb, averaging $2.00 versus 50 cents, and will save around $5.00 in electricity. There are other new bulbs that are emerging that are safer but may be, for the time being, cost prohibitive. For example, Home Depot has started selling a $5.00 Philips halogen bulb that’s 30% more efficient than current incandescents and has no mercury; however, most consumers will already balk at the $2.00 CFL and are unlikely to want to spent twenty dollars on a 4-pack of bulbs.

Under law recently signed by President George W. Bush, all light bulbs must use 25% to 30% less energy than today’s products by 2012 to 2014. The phase-in will start with 100-watt bulbs in January 2012 and end with 40-watt bulbs in January 2014. By 2020, bulbs must be 70% more efficient. Compact fluorescent bulbs meet the more stringent 70% efficiency standard. There are now laws banning incandescent bulbs in Cuba, Venezuela, Australia, Canada, and the European Union (27 countries). However, most of the other countries are not making as aggressive a timeframe for phase-in, which allows more time for new, less expensive, technology to be invented and recycling resources to potentially be created.

Some state and counties are beginning to pass similar laws. California, Connecticut, North Carolina and Rhode Island, and New Jersey are in the process of legislating against or have already passed laws against incandescents. Beginning January 1, 2012, it will be illegal to sell, purchase or even use a low-efficiency incandescent lamp in Suffolk County, New York.

The idea of allowing mercury to be placed in an easily breakable consumer product is fraught with public safety risks. In fact, it required a special exemption from the EPA to allow mercury-fluorescent lamps to be sold to consumers in the first place. Despite the decrease in the amount of mercury in the environment coming out of coal-fired power plants, the risk is being delivered directly to consumers’ homes.

The issue of breakage and disposal of CFLs is significant. If you drop one or more bulbs during installation or removal, or if your child knocks over a lamp with a CFL and it breaks, you have exposed yourselves and your children to airborne mercury. If a bulb does break in a home, leaving the window open and clearing out the room is not sufficient clean-up. Clean-up requires individuals to wear respiratory protection, as the Lumex values in the area surrounding the broken bulb will exceed safety guidelines. The broken glass cannot be vacuumed because the mercury vapors will disperse, causing wider-spread danger. Note that on some packages of CFLs, there are no warning labels (they are not mandatory) to tell a consumer that, for example, CFLs cannot be used with track, recessed, or dimmer fixtures, which could cause overheating. Some warning labels have information but in fine print.

Mercury affects the nervous system, causing brain, nerve, kidney, and lung damage. It can cause memory loss and, in extreme cases, even death. It retards brain development of fetuses and children, who are most vulnerable to mercury’s toxic effects. In fact, as of January 1, Minnesota banned mercury as a preservative in beauty products. Senator John Marty of Roseville, Minn., who sponsored the ban, stated, “Mercury does cause neurological damage to people even in tiny quantities. Every source of mercury adds to it.” New York and Illinois prohibit consumer products with mercury, such as figurines, toys and jewelry. So, why make mercury in the form of compact fluorescent light bulbs the likely replacement for incandescents?

Mercury is so toxic that the world’s 30 leading industrialized countries, including the U.S., have agreed to “cease all further work on mercury”. This means that we have to import mercury in order to make the bulbs, in violation of the spirit of the coalition.

There are inadequate ways to CFLs recycled. Ikea Stores are accepting them for recycling. However, my local store representative told me that when “dropping” the CFLs into the mailbox-type receptacle, the possibility exists that the bulbs could break. In addition, communities will have to find a safe and effective means of recycling these bulbs. Currently, this type of recycling in many communities is the once every month or two whereby any hazardous materials, such as lead-based paint cans and car batteries, can be dropped off. Some states, cities and counties have outlawed putting CFL bulbs into the trash, but in most states the practice is legal. Generally speaking, compliance is likely to be quite low as consumers currently toss used mercury-free incandescent bulbs into the trash.

However, there is obvious risk to storing and transporting the CFLs, which could be broken inadvertently while in one’s garage. Certainly we can’t all be driving to Ikea every time a bulb needs replacing. “The problem with the bulbs is that they’ll break before they get to the landfill. They’ll break in containers, or they’ll break in a dumpster or they’ll break in the trucks. Workers may be exposed to very high levels of mercury when that happens,” said John Skinner, executive director of the Solid Waste Association of North America, the trade group for the people who handle trash and recycling.

If a CFL is thrown into the regular trash container, when the garbage truck crushes the bulb, the mercury is released and the garbage man is exposed to a neuro-toxin. Subsequently, when the garbage is delivered to a landfill, mercury is released into the air, and, subsequently, soil, and water.

In Suffolk County, New York, County Executive Steve Levy, after signing into law legislation banning incandescents in 2012, he responded to a constituent as follows: “Rest assured, I did not make the decision to convert County facilities lightly and will take proper disposal of these bulbs [CFLs] seriously once full-scale conversion begins officially.” In other words, ban the safe but inefficient bulbs even though we have not figured out a safe way to deal with the very real problem of what to do with broken bulbs and used bulbs. As fluorescent bulbs are already on the market, the time to explore the options has already passed.

According to www.lightbulbrecycling.com, each year an estimated 600 million fluorescent light bulbs (“lamps”) are currently being disposed of in U.S. landfills, amounting to 30,000 pounds of mercury waste. Astonishingly, that is almost half the amount of mercury emitted into the atmosphere by coal-fired power plants each year. In addition, it only takes 4 mg of mercury, the amount of mercury in one compact fluorescent bulb, to contaminate up to 7,000 gallons of freshwater. This is prior to these laws even going into effect.

We need to delay legislation until mercury-free bulbs, such as halogens, become more available at prices less expensive than they currently are. The reality is that consumers are going to choose the relatively cheaper, mercury-laden compact fluorescent light bulbs which bring the dangers of mercury directly to the consumer and will inevitably harm the environment and its inhabitants far more than the energy efficiency will help.

We need to contact our local legislators as well as President Bush and tell them to delay implementation of the new energy efficiency standards indefinitely until such a time that halogen technology can improve and become cheaper. We need to have more recycling facilities in place for the compact fluorescent light bulbs that are already out there and safer ways to get the light bulbs to these facilities.

For additional reading on this subject, consult these web links where much of the preceding information originated:

May 11, 2008

This Mother's Day, from my boys, I got two hydrangea bushes to start a little garden on the side of my house. I named them Bessie and Myrtle.

But my best mothers day present was being introduced to some chickens.

Today after church we decided to drive around and explore Maine. We drove by a farm and noticed that three chickens had crossed the street and were hanging out next to the primary school. We pulled up to them to show them to the boys. Chandler rolled down his window to greet the hens.

"Hewwo Chickens. How are you? My name is Chanwer. These are my friends, Webster, Mommy and Daddy".

That is the biggest mouthful my little guy has ever been inspired to say.

Shannon Johnson is a Maine autism mom, founder of the autism social networking site FoggyRock.com, and daughter of Nancy Cale of Unlocking Autism.

Her piece on her experience this Mother's Day really brought home to me the continuing quiet sacrifices that autism mom's make daily, hourly, for the children that they love so much.

Happy Mother's Day to you mom's who have joined the club that none of us wanted to join, and earned the title "Loving Mother" in a way that few have.

Happy Mother's Day Shannon.

Un-invitedby Shannon Johnson

Wynn's teacher gave me a head's up about the Mother's Day luncheon planned for the next week. She wanted to be certain that I set the time and date aside so that I wouldn't miss the festivities. Maybe she also knew that Wynn would need some extra time to process the event. Well, he did.

The first time I mentioned the party he screamed, "No! Don't come!". When the official invitation arrived in his lunch box, he screamed, "I said, don't come! I'll be really mad if you do!" When Wednesday finally arrived, and I brought up the topic of the big day, he screamed, "You mean you have to come? It will ruin my day!"

Now, for the best part of the last 13 years, I have gone out of my way....certainly, I have ignored, looked the other way, justified, set aside, left alone, let go, avoided, adjusted, adapted, hesitated, rotated, navigated and even subjugated.....all in an attempt to NOT ruin my son's day.....so I knew that attending the luncheon (never mind that it was in my honor) was out of the question.

I would again, do everything in my power, not to ruin an otherwise good day.

Wynn just hasn't understood, ever, the subtle inferences of social occasions. Why would Mother's Day be so important when his own birthday only means he can have a dessert or two? He attaches no significance whatsoever to holidays, ceremonies or traditions. If I showed up at his school at 12:15, as the invitation advised, I would simply be someone being somewhere she didn't belong. If he handed me anything, it would be in an attempt to move me quickly to the parking lot and back into the oblivion where I exist until he steps off the bus and asks for dinner. In his world, the one he daily constructs to bring meaning into his chaos, he has no place for luncheons, and no room for an annual display of sentiment as dictated by Hallmark or even Congress.

So, I meet briefly and covertly with Wynn's teacher on the front lawn by the parking lot. She hands me a hand-painted clay pot overflowing with budding violets that she promises Wynn planted. There is also a package donning tissue paper and a card that I open in the car. In a curly font are the words of Emily Dickinson, probably written for her own worried parent.

"A mother is one to who you hurry when you are troubled".

If Wynn's calls for "more hot" water in the tub, for more lima beans in his plate, for snuggles and songs, for stories and jokes, for answers and action are ushered my way, which they are, then I guess, luncheon or no luncheon, I know, at least, that I am, in no uncertain terms, his mother.......And knowing that is celebration enough for me.

May 9, 2008

--Journalist Who Covers the Autism-Vaccine Debate to Speak About Political and Scientific Developments in the US and Updates to His Book “Evidence of Harm”—

David Kirby, the New York based investigative journalist and author of the NY Times Bestseller, “Evidence of Harm, Mercury in Vaccines and the Autism Epidemic – A Medical Controversy,” will visit the United Kingdom on the 4th - 6th of June to discuss recent developments in the vaccine-autism debate in the United States.

Mr. Kirby, a former contributor to The New York Times and a regular writer for the extremely popular online blog, The Huffington Post, will give a free public lecture on Wednesday 4th June, 6:30-10PM at Regent Hall, 275 Oxford Street, London. He will also attend a book signing and speak with members of the UK media, among other activities, while in the country.

Among the subjects to be addressed by Mr. Kirby are:

1) A recent case in the US Vaccine Court in which the federal government conceded that vaccines induced autism in one little girl – and updates on other cases in the court.

2) Growing evidence of a link between mitochondrial dysfunction and autistic regression, and case studies of several ASD children with mitochondrial issues.

3) State-of-the-art research underway at top universities on the connection between environmental toxins, mitochondrial function, oxidative stress, glutathione depletion, neuro-inflammation and autistic encephalopathy.

4) Declarations by all 3 US Presidential candidates that autism is epidemic and calling for more research into vaccines and mercury as a possible cause.

5) Recent studies linking ASD risk with heavy metals and other contaminants in air pollution.

Mr. Kirby’s visit is being sponsored by Generation Rescue, The Autism Research Institute, National Autism Association, Coalition for SAFE MINDS, and Talk About Curing Autism. All are autism groups formed by US parents of children with neurological disorders. These parents believe that autism and other learning disabilities are environmentally-based illnesses that can be treated through biomedical intervention.

“Evidence of Harm,” debuted on The New York Times bestseller list in 2005, and is still widely read today. It won the 2005 Investigative Reporters and Editors Award in 2005 for Best Book. Kirby has appeared on NBC’s Meet the Press, CNN’s Larry King Live, NBC’s The Today Show, MSNBC’s Imus in the Morning, CNN Headline News, Air America, and hundreds of other radio and television stations around the world. He has been invited to speak at the US Federal Claims Court’s Judicial Conference, this November in Washington, DC.

David Kirby is available for media interviews before and during his visit.

US Medicine: 97% of All Autism Cases Went Undected - Until Now?May 9, 2008Huffington Post

If autism has always been with us in the same high numbers that we see today -- as some scientists and academics contend -- then we should be able to identify the 1 in 150 adults currently living with autism in places like the US and UK...

But still, by any currently available measure, there appear to be many more people under the age of 18 with autism than there are adults with the disorder....

Investigators could only find, "a total of 645 adults diagnosed with autistic spectrum disorders in Scotland,"...

...Is it possible that only one in every 110 adults with autism in Scotland is standing up and being counted?...

May 8, 2008

After writing my last piece on the questions on the link between GMO's and Autism based on the comments of Dr. Arpad Pusztai in "The World According to Monsanto", I wrote to Dr. Pusztai and asked if he thought the ideas may be plausible ones.

He has not read the post yet, as he is traveling, but after reading the summary of the ideas in my email to him, he thought that the idea that the adjuvant properties of GMO's are setting our kids up for vaccine injury was a plausible one.

Here is his response:

Unfortunately, I have not had the time to read your second bit but I shall do so soon. However, I have found your ideas on the possible adjuvant role of GMOs very convincing.

You know there is quite a bit of evidence that the Cry toxins from Bacillus thuringiensis are strong immune stimulants and also immune adjuvants. Moreover, in GM-peas (not commercially available) even the transgenically expressed bean alpha-amylase inhibitor (not allergenic in beans) becomes an allergen and and immune adjuvant when its gene is transferred to peas.

There is now ample evidence to reinforce our original observation... that one of the unintended and unpredicted consequences of genetic engineering is the inducement of immune changes in the recipients, particularly in their mucosal (gut) immune system.

I shall attach our 2006 scientific review in which you will find more material on this.

So, your idea that in addition to the adjuvants (thiomersal, aluminium, etc) used in vaccines, if the diets contain immune adjuvants originating from GMOs and in receptive individuals, one may reinforce the possibly unwanted immune consequences of vaccination. This may be one too many of the immune changes that contribute to the development of autism in a genetic subset of individuals.

I am sorry that your child may be one these unfortunate individuals. It is possible that you may shut the doors after the horses bolted but I very strongly advise you to keep an eye on your child's diet and avoid GM corn, GM rice, etc at all cost. Although the Americans have difficulties to maintain the GM free status of even organic foodstuffs, please, do your best to cut out all GM from the diet. Write to Ronnie Cummins at OCA (ronnie@organicconsumers.org) for advice if you have not done so already.

Because GMO foods are not labeled in the US, we have no idea if our kids are reacting to them.

Apple Mark of Something Beginning with A has the luxury of actually know what his child is eating as a resident of the UK and shares this with us about his autistic son's experience with GMO foods (FYI... in Europe, Soy is called Soya):

Edward had been on gf cf diet for 6 months had made huge progress. We had also eliminated Soya on the advice of Paul Shattock as most Soya is gm and we have tried to go as organic as possible.

Interestingly Edward does not appear to have a problem with corn (not sure if gm maize is permitted in the UK)

Soya was reintroduce into his diet accidentally on the 17th Nov 2006. He slowly slipped back into autism. The effect on Edward was such that he was unteachable at the nursery. They had to devote 1-1 care for him and this is not expected of them as they are not special needs. We were extremely luck to have such a good nursery.

He started to recover after a week but it was 6 weeks before he was back to pre soya. Not a happy Christmas.

His nursery had a nativity play and Edward sat through it looking dazed occasionally stimming with his fingers, this is in contrast with the Easter 4 months later.

Here is his diary entry on the day we realised:

Saturday 2nd December (Lara)

"SOYA DAMN IT has made Edward autistic again.

Everyone has noticed. I stopped his "new dietary needs". All his new food had Soya in it. He has had such a bad reaction to it and has gone backwards. He is not receptive, no eye contact, no concentration, tantrums, not able to speak, "unusual behaviour", on his tiptoes, no poo since Friday [5days].

I have been stressed tearful and feel really awful. He desperately needs a poo to get rid of the toxins. I gave him lactulose Tuesday and Wednesday."

May 3, 2008

Watching The World According to Monsanto, I was struck by the section of the film about Árpád Pusztai’s research that showed that rats fed GMO potatoes developed gut problems and an immune response. The section is as follows:

Árpád Pusztai, world renowned scientist lost his job when he warned about GE (genetically engineered or genetically modified) foods.

1998 Aberdeen, Scotland

Árpád Pusztai worked for the Rowett Institute in Scotland. At the Ministry of Agriculture’s request, he lead a study on genetically modified potatoes with a budget of over two million Euros and a staff of 30 researchers, to prepare the arrival of GMOs in Great Britain.

"We were all enthusiastic about it… I was enthusiastic about it… The ministry thought that if we did this study, looking at all aspects, then it would be an endorsement of GM and when they introduce it, they will say that the foremost laboratory in Europe… nutritional laboratory… had looked at them and found them all right."

Árpád Pusztai specializes in lectins, these proteins function as an insecticide protecting plants against aphids. Rowett scientists had created potatoes that were resistant to aphids, and into which they introduced a snowdrop gene which produces the lectin in question. Beforehand they verified that in their naturally occurring state, lectins themselves do not pose a health risk.

The genetically modified potatoes were tested on rats.

"It had a twofold effect. First it started to increase a proliferative response in the gut… and that you don’t like… because this is possibly… I am not saying it is cancerous… but what it does… it can have an adjuvant effect on any chemical… any chemically induced tumor.

The other thing is that the immune system was certainly… got into high gear. And that was… we don’t know whether that is good or bad. But it certainly did recognize the GM potatoes as alien. And we were convinced that this insertion is causing the problem and not the trans gene. As I said, the trans gene when we did it in isolation, even at 800 fold concentration, didn’t do any harm.

It was a very important point because the American FDA is going on by mutual Technology. And what we did say and what we did publish actually corroborated and confirmed that it was not the trans gene that was the problem, but it was the technology."

When Pusztai was interviewed by the BBC, with permission from his bosses, he stated:

"As a scientist actively working on the field, I find that it is very, very unfair to use our fellow citizens as guinea pigs."

The day after the statement was broadcast, Pusztai was fired and the team was dismantled.

While watching this, I put together a few things:

1. Dr. Pusztai’s finding, that GM potatoes triggered gut problems and an immune response.
2. The additional section of the documentary which discussed the migration of trans genes (genes that have been genetically modified and inserted into cells that then become a part of the DNA) from GM corn sold in the US to native corn grown in rural southern Mexico.
3. A comment that David Kirby made in his column that reported on the March 11th CDC conference call that discussed the Hanna Poling mitochondrial disorder and its link to autism.

Kirby wrote:

"Some researchers believe that the modern American diet is largely to blame for an increase in the number of children whose underlying mitochondrial dysfunction is "triggered" into autism by febrile infections.

The answer, they hypothesize, is corn.

The American diet has become extraordinarily dependent on corn oil and corn syrup used in processing, these experts contend. They say that corn oil and syrup are inflammatory, whereas fish oil is anti-inflammatory. Could our diet be a factor in making this mutated gene become more pathogenic?"

In an email conversation with Mr. Kirby while he was researching that conference call, he wrote to me that:

"One of the top scientists I spoke with today said the increase in autism in America was due to consumption of corn"

His comments in the article about the theoretical corn/inflammation link to autism were straight from a high level scientist involved with the CDC and on that conference call.

Putting all these together, my questions are these:

||Could not just over exposure to corn be the problem, but exposure to genetically modified corn, presumably that used the same problematic technology as Dr. Pusztai’s believed was to blame for the gut inflammation and immune response in his rats that were eating genetically modified potatoes?||

||And what exactly does the CDC believe to be the relationship between the American diet, overconsumption of corn products, inflammation and autism?||

||And if they believe, or even suspect, that inflammation is at play in the bodies of children with autism, why have they not stated this publicly and encouraged research and treatment along these lines?||

||And if they believe there might be a link, then why are they not investigating and promoting the Specific Carbohydrate Diet that removes corn products?||

Most vaccine induced regressions happen after a child's first birthday, around 18 months to age two, after they have begun eating processed foods; and we have no way of knowing if those were GMO foods unless we only bought foods that were labeled organic.

||Was there an inflammatory/autoimmune response already going on in our children, due to the gm foods they were consuming, that set them up for vaccine injuries because they had taken in one adjuvant too many?||

Remember Dr. Pusztai's words, "it can have an adjuvant effect on any chemical"

The standard contraindication for vaccination is the illness of the child because their immune system is not properly regulated to safely accept the vaccine. Parents are taught not to vaccinate when their child has a cold or the flu or any other viral illness. But if our kids had dis regulated immune systems at the time of vaccination due to GM food derived immune system over stimulation, we would have no way of knowing, and would be presumably be putting our kids at risk for further immune system damage by vaccinating at a time of immune activation.

Corn is a problem for many of our kids. Because genetically modified food products are not labeled, we have no way of figuring out if our kids are having problems with corn, or GM corn. Or if one causes a bigger problem than the other. In fact we have no way of knowing at all what GM foods might be doing to our children.

Chandler drank milk by the truck load before he regressed, it was probably Bovine Growth Hormone milk, which is found to have inflammatory effects on the cows and because of the illness of the cows puss is in the milk, as well as the antibiotics that were given to the cows to counter the infections. To say nothing of the hormone itself which also may be in the milk.

||So is the very good response that my own son had to the GFCF/SCD Diet, which removes grains, dairy and processed foods, and encourages eating only organic foods, due in part to the fact that he is no longer eating pro-inflammatory genetically modified foods?||

The way most of the interventions that help our kids are discovered are by happy accidents, we find something that helps them, then spend 5 years trying to figure out exactly why it works for them.

||What if the SCD diet worked not just because it was removing complex carbohydrates that feed yeast, but also because it was removing foods that were having an adjuvant effect on him?||

His belly went from puffy (suggesting gut inflammation) to flat in about three weeks.

There has not been any discussion that I know of surrounding the potential role of GM foods and autism in our community. I am assuming because, like me, none of us knew our kids were eating them. It is certainly an important discussion to be had as many of our kids on GFCF diets will continue to eat processed foods with genetically modified ingredients. The most immediate treatment question that jumps to mind is:

||Are poor responders to the GFCF diet still getting so many processed GM foods that gut inflammation and autoimmune responses remains high and negates much of the good the diet may do them?||

But bottom line for me, the biggest question I have is:

||WHAT THE HELL HAVE I BEEN FEEDING MY CHILDREN FOR THE LAST SEVEN YEARS???||

UPDATE:

I TOTALLY FORGOT ABOUT PESTICIDES AND HERBICIDES!

These plants are being engineered so that they can be doused in Roundup herbicide and so that they produce their own pesticides, and we already have evidence that bug and weed killers are implicated in autism and mitochondrial disorders, which HHS and Julie Gerberding herself say are at play in vaccine injuries that produce autism 'symptoms'.

"Monsanto came to Arthur Anderson to look at how they wanted to position themselves, and they asked them, 'where do you want to be with Monsanto in 20 or 30 years?' And the answer was, 'We want to control the global food supply".

- Kirk Azevedo, former Monsanto employee

If you eat food, you need to watch this documentary:

The World According to Monsanto (updated: found a working source for the film)

I have never understood what the big complaints about genetically modified foods were all about. If you can breed a plant to be resistant to bugs or more fruitful, if you can get a cow to give more milk, why would that be a bad thing? People have been cross breeding plans for thousands of years. I assumed that bioengineered foods would be tested like crazy by the FDA, not allowed into the food supply if they were problematic and would be labeled as GMOs (genetically modified organisms) in the grocery store, because in this country we have to have full disclosure in the packaging of our food.

I figured that when they did come on the market, I would just avoid them for a few years to make sure that there were not problems en mass. You don’t buy a new model car the first year on the market, you don’t take a new vaccine (Gardasil) or medication as soon as it is introduced, and you don’t eat stuff that has ingredients that have not had a safety history of at least a few years, right?

On March 11th this documentary on Monsanto’s business practices and their introduction of GMOs into the food supply aired on French television. Apparently we have all been eating genetically modified foods for a decade or so. 70% of the items at the grocery store contain GM foods. They are not labeled as such, and, as I was with vaccines, apparently I was very naive about the FDA’s regulatory process.

Instead of testing GMO foods for safety, the FDA decided that they were similar enough to the original food product to just be considered equivalent to the original food product, and GMOs do not even have to go through as stringent a regulatory process as a new food dye or preservative.

As with vaccines, the FDA does not do any testing of their own, but just reviews the company’s safety studies; but just taking the word of a company that already has a history of very serious abuses of the public, like the PCB poisoning in Anniston, Alabama that Monsanto was responsible for, is monumentally foolish. Internal Monsanto documents showed that the contamination in Anniston was so serious that fish put in the local waters died in THREE AND A HALF MINUTES, but Monsanto decided to continue what they were doing because, "…we can’t afford to loose one dollar".

Watch the documentary to see what happened to the poor, black population of Anniston. (If this was done in a town full of white people with money, you probably would have heard about it long before now. We tend to draw more attention when we complain that our kids are being poisoned).

As with vaccines, the Monsanto GMO safety studies turn out to be junk, that actually claim the opposite of what a well designed study might find. (If you don’t want to find a problem, only look where you know you won’t find it!) The parallels to Verstraeten, Denmark and Fombonne and the like are obvious to anyone in our community.

This is a two hour documentary, so pick a night this week, grab your spouse and watch it. This is really important.

I lost track of how many whistle blowers, previously highly respected scientists, were fired and had their reputations trashed for reporting that their findings showed that Monsanto’s GMO products were not safe or reported the million dollar bribes that Monsanto was offering to regulators. Researchers found they caused problems in cell division, which is step one in the development of cancer, and that the bodies of animals reacted to the GMO food as a foreign substance to be attacked, stimulating the immune system. (Does this set off any alarms for anyone? More on this in my follow up post.)

I also lost track of how many cotton farmers in India had committed suicide because of Monsanto’s take over of the industry. Was it 600 last year and then another 600 so far this year? Monsanto sells the seed, which are marketed as growing plants that are resistant to a certain problematic bug, at very high prices, but it apparently doesn’t even protect against the bug, and often take on a blight and dies. Farmers, rather than being faced with the shame of loosing everything, are killing themselves by the hundreds.

And because Monsanto has flooded the market with their seeds, it is apparently next to impossible for the farmers to get a hold of regular seeds any more.

Which leads us to the craziest thing about this whole story. That Monsanto had patented seeds (how did the supreme court decide that was legal?), and by flooding the market, gotten rid of other seeds (if they are not being grown and re harvested every year, plant lines die out, and in about a decade, Monsanto has come to own like 90% of the world's seeds. Farmers using these seeds cannot save the Monsanto owned seeds from a previous crop and replant. They have to re buy them every year from Monsanto, and the corporation is suing local farmers suspected of resowing seed. Even when they haven't and can prove they bought the seed. Apparently Monsanto is now the Stalin of the Farm Belt infiltrating local farming communities, showing up incognito at local meetings and encouraging farmers to report on each other.

If a truck driving by your land accidentally drops a seed and it grows on your property, Monsanto can sue you. And apparently is suing people for seeds that have blown on to their land and taken root. Farmers are giving up fighting these law suits, that drag on for years, because they can't afford protracted legal battles, and just paying Monsanto a settlement.

Additionally, Monsanto is patenting regular seeds, seeds that have been around forever, so that they can just put them in a vault and not let anyone use them.

So Monsanto is basically poised to own food. All food. It is like something out of a movie, but apparently Monsanto is more clever than Hollywood, because not even the X-Files came up with a conspiracy plot to own all the food in the world.

Oh and by the way their food may cause cancer and autoimmune disorders.

I can’t even explain all the problems that this documentary brings to light in the US, the UK, Canada, Mexico, Argentina and India. Monsanto declined to be interviewed for the documentary and has not commented on it, but their web site assures us that they are working ethically.

For anyone who criticizes the autism community for their mistrust of the federal regulators, big pharma and the revolving door between the two where one day someone is working for the government on vaccine safety, the next they are a high paid pharma employee and next year they are back in government regulation (or even doing both at the same time), this documentary shows in living color that our mistrust is not only founded, but probably not distrustful enough.

This story is our story. Replace Merck for Monsanto, replace FDA/CDC for the FDA and replace vaccine for food, and this is what parents like me have been bitching about.

Our kids are getting sick, and when we look into how the sausage that is being injected into our kids is made, this is the junk we are finding.

Our sick babies are the canaries in the coal mine of this toxic world. It is long past time for us all to wake up and realize that we might have been wise to listen to those crazy, drama club drop out hippies screaming about FrankenFoods in the 1990’s. They might have been crazy and dramatic, but they might not have been wrong.

UPDATE: In the mean time... if you want more information, check out Mercola's post on the subject.

ANOTHER UPDATE: If you have Netfix, go watch the 2004 documentary "The Future of Food". It serves as a prequel to this documentary.

Interestingly, one man is featured in both films. He is one of the fired researchers in The World According to Monsanto, but was still employed during The Future of Food. He was a professor at Berkley. Berkley for petes sake! When Berkley starts firing professors for standing up to corrupt multinationals for the sake of indigenous foods and rural farmers who grow them, that is pretty much a sign of the end times.

Last year they applied for a patent on a gene that is found in pigs. A pre-existing gene that has always been in pigs and that Monsanto had absolutely nothing to do with, and if it is granted, they will own almost all pigs everywhere. If this is legal, then anyone with enough money and hubris can walk into the patent office and claim the rights to a gene sequence in any living thing, whether they created it or not, and they could become the legal property of said entity and anyone using them must pay a licensing fee to the patent holder.

Further, if two pigs get the natural urge to get funky and do what pigs do and they make a little piglet, the pigs will have violated Monsanto's patent because only Monsanto would be allowed to say who can make little piglets and how. Said owner of the two pigs could then be sued by Monsanto. And we know that Monsanto LOVES to sue farmers. They have threatened thousands of farmers with lawsuits, sued hundreds and reaped millions in settlements. They have a $10 million budget and a staff of 75 devoted solely to prosecuting farmers.

They have already done it with seeds, now they have moved on to livestock. Where exactly does that end? If they patent a gene that is in my kidney, do I have to pay them every time I go pee pee?